Tuesday, March 26, 2013


We've all been sick again. It started with a massive oak bloom about a week ago: the slight runny noses, the tired, red eyes...Mary Louise and David seemed to hold steady for a number of days with breathing treatments and antihistamines.

Then on Saturday, Mary Louise got notably worse. On Sunday, she started with a fever - 102.4 - and we went to Urgent Care because her regular pedi (who has emergency hours on Sundays) was completely booked. She was diagnosed with acute bronchitis and possible pneumonia (after a chest xray) and her oxygen saturation was hovering around 94%. They gave an antibiotic shot and sent us home.

Monday morning around 1am, Mary Louise had a horrible coughing fit. She couldn't catch her breath and had obvious retractions. Brent took her to the ER. Her O2 sats were around 95% and they wouldn't admit until they dropped back to a 94%. So, they prescribed antibiotics and sent them home.

We went to the pedi's office about 10. Mary Louise had "horrible" breath sounds, rattles, wheezes and considerable chest congestion. She was prescribed oral steroids, continued breathing treatments- with a 3rd medication scheduled, started on oral antibiotics, continued OTC meds for chest congestion and fevers.

We are doing much better today after a night of decent rest. I'm expecting some serious mood swings shortly - from Mary Louise - ha - since she's on more steroids than ever.

David is doing well - he did have a few little crackles in his upper chest but is improving with regular nebulizer treatments. Everett has a nasty cough - but his congestion is in his sinuses only- I was told to nurse as much as possible (it's a wonderful thing, right?). No ear infections for anyone.

Diagnosis: viral cold / pneumonia


So, a question asked of us pretty regularly is: "is this normal?" (in so many words - there are a thousand ways to ask)


Yes. Sort of...everything is just a hair more critical with them.

Our kids get sick very easily. It takes them a little longer to get over things - and they need more support with breathing treatments, etc. But, generally, their illnesses follow the trends for our area - the majority here are suffering with serious sinus issues right now.

Mary Louise, however, seems to have gotten a lion's share of our (mine and Brent's) crappy genetics - Brent suffered with childhood asthma as did many of his immediate family. It (asthma / allergies) runs heavily on my dad's side of the family as well.

The pediatric intensivist we've seen in the past hinted that this might be the case when Mary Louise was in the hospital with her first bout of acute pneumonia at age 2.5 - but said to wait and see as he rather hoped his feeling was wrong.

So, though we can't negate the fact that Mary Louise and David were intubated for an extended period of time, and had a very rough start in life, we also can't ignore the possible genetic factors in play (not that it matters too terribly much - respiratory illness is respiratory illness no?).

With this week's illness in progress and medicine changes #9001-9009 in play, I have been a bit more forceful with requesting a pulmonologist referral (that's right. we still haven't received one). We have an appointment on Thursday to discuss formal paperwork for said referral in a face to face fashion - that usually shoves things right along. Hopefully, once we have a specialist on board for Mary Louise, her care can be more streamlined and, over time, we can prevent this "one foot in the hospital door" severity of illness from happening. So far, every time we feel we get to that point with her meds, she quickly proves us very wrong. Right now, I just think we can do a bit better for her - we just have to figure out how.

In speaking to other comparable micro preemie parents with children a few years older than Mary Louise and David, their children had a notable decrease in severity of illness between ages 7 and 9 years...umm...so there's that.

At the very least, we have identified some environmental factors contributing to their illnesses - pollen is one - there is little we can do to keep them away from it - but we can be aware; smoke is another - and we can certainly be proactive with that one.


I've also gotten a bit (more) demanding with the school board lately. David hasn't received speech services since Dec. 12th. Stories and reasons have changed over time, but ultimately, the issues we've had were to be addressed during an "in home" meeting a couple of weeks ago. The speech department opted not to show up, however, so I (officially) refused to sign the IEP update until his service inconsistencies were rectified and handed those who attended the meeting a typed list of characteristics and practices we feel would be best matched with David.

I received a call from the head of the speech department the following Tuesday morning with the name of a new therapist and renewed hope that our rocky road with this system would soon smooth.

We were supposed to meet David's new ST yesterday. Sadly, with the level of illness in the house, we've had to postpone.

On the upside, David's fabulous IT gave nothing but positive reviews on David's progress. She feels he is on target with his peers as far as developmental abilities and our goal now is to make sure his progress remains steady without any regression. Our big summer break will be followed by early testing and evaluations next year. The results of those tests and evaluations will determine whether or not an official discharge from the program is appropriate!!

woop woop!

I feel gripey and confrontational these days. But, my wee ones are taken care of and know how (much) they are loved. Sometimes gripey and confrontational is what it takes to get the job of the day done - but I have to admit, I'm very much looking forward to some happy, sunny, summer days!


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